We Started Peanut and Tree-Nut Food Allergy Treatment OIT (Oral Immunotherapy)!

Our peanut allergy treatment journey with IgE numbers over 100, a history of anaphylaxis and skin contact reactions. 

We are getting ready to start OIT (oral immunotherapy) for peanut! 

My worries are and have been:

• How will my daughter's already not so great (sometimes struggles with GERD) digestive system react to daily eating her allergen?
• The possibility of reacting after a dose! 
• Going from being worried about the possibility of accidental ingestion to daily worry of reactions to the daily dose.
• Wondering if a reaction after a dose is not a reaction to the dose, but just a asthma/allergic reaction to her many environmental allergies. 
• The 3 hours round trip to get to the OIT office every two weeks. 
• The stress of making sure I give the correct dose at home and not making a mistake.
• The down time after the dose. 
• The long term, the dosing for life and all of the possible reactions or mistakes etc along the way. Wondering if this is the best choice for my daughter, and for our family. 
• The financial burden.  
• Wondering if she will remain on board with the dosing if she does have a reaction... Etc etc

The plan is that she will start with peanut, and if that goes well we will add cashew and pistachio a few months later, and if we have to, walnut and pecan. Pesky walnut and pecan... Will do the blood draw in the AM and then have the first peanut dose at our next appointment, after they get those results in a couple of weeks.

                     Skin prick test: 24-peanut, 45-cashew, 67-pistachio, the others are various nuts.

All positive in regards to our experience with first OIT app :-) No allergens eaten yet as we are having further testing (blood and hopefully a food challenge) to rule out a couple of nuts that were negative last year but positive barely again at today's skin prick test. The OIT allergist and his staff were wonderful! 

The blood test results:

I am not surprised, but I am now a bit more hesitant and nervous about our first peanut ingestion OIT appt on Monday with these numbers for peanut. Our local allergist will not do in office food challenges with positive results, so we would have to travel to do those in Dr. A's office. 

IgE Peanut >100 Abnormal kU/L Class VI

IgE Ara h 1 67.90 Abnormal kU/L Class V

IgE Ara h 2 >100 Abnormal kU/L Class VI

IgE Ara h 3 38.50 Abnormal kU/L Class V

IgE Ara h 8 0.57 Abnormal kU/L Class II

IgE Ara h 9 <0 .10="" div="" nbsp="">

                                 Bottles of pre-measured doses in my cooler for the drive home

Initial day dosing for peanut OIT (6mg all together but will start at 3mg daily) down the hatch! No reaction except mild itching in back of the throat that went away quickly! The black clouds of worry that hung over me as this day grew closer have lifted! :-) I am so relieved! The nurse was so great as was Dr. A!!

                                                                 Dosing on vacation! 

It has been a few weeks, and we were able to get up to 6mg of peanut at out first in office updose! She is now on 6mg of peanut each day in her 5ml dose. We even went on vacation and gave a dose during an eclipse party! 

After a few doses where she experienced long lasting stomach pain and burning about 15-30 min after the dose we have backed the dose down to 2.5 mg and will gradually build it back up from there. 

                                  Reminding myself that we can take out time on this journey. 

It has been a couple of weeks and we have gotten back up to 3mg. We tried one day of about 4mg and she had stomach burning pain again, so we are holding at 3mg for now. We have also added a daily Zantac to try and prevent the burning stomach pain. 

A couple of weeks later and we are at 3.5mg of peanut and are going strong with no stomach issues! 

....

Months later, (I swear I intended to keep up with blogging) and we are now at 12mg of peanut a day on 8/28/2018. We were in a holding pattern again at 6mg with burning stomach pain, but after switching dosing from the evening to the morning and then to right after school, the pain is no longer a daily issue. My daughter is still on board with this treatment and excited about having no more burning stomach pain. 

Recently we added braces into the equation, so I am a bit nervous about broken skin in the mouth from the brackets rubbing against her lips, we will be rinsing extra carefully after each dose.

Will update this blog post as we go along! 

Food Allergy Humor, Parenting Fun with Food Allergies

Sometimes laughter is the best medicine!

Recently I started a facebook page to share my food allergy and parenting doodles. My hope is share the comic side of the food allergy life and parenting in general. I called it Happy Pancake Parenting as I have been told that the first child is like the first pancake ;-)

Rush Immunotherapy, Environmental Allergens, and Double the Allergy Shots

My daughter has been getting allergy shots for the last two years to help with her environmental allergies. They were working well until she developed a whole batch of new allergies. 

Recently we discovered that my daughter developed new allergies and now she gets 4 shots rather than the two shots that she was previously getting. Her allergy shots have helped her so much that under her allergists care, we were able to lower her antihistamine intake and asthma medications. She felt wonderful for months! Even her oral allergy syndrome was improving, but then all of the sudden, she went from having mostly clear headed and wheeze free days, to struggling again daily with hay-fever, and asthma flare ups. We had moved into a new part of the country, and she had developed allergies to the local environmental allergens. Oddly enough, she is not allergic to ragweed which is one of the most common allergens.

Because of the variety of allergens that she is allergic to (48 out of the 55 tested), the allergist was not able to combine them into fewer than 4 shots. We were told that some allergens degrade the other allergens if combined. Fortunately my daughter is able to tolerate getting four shots at one time. Our allergist told us that it is very unusual to have to get 4 allergy shots at a time and that he only had a handful of patients out of all of his patients that need four allergy shots. He told us that my daughter is supremely allergic, and is a rare case, in his experience.

To go from her 2 shots a month to now 4 shots, she went through a day of rush immunotherapy. Rush immunotherapy is where you get a few months of shots in one or two days. To prepare for this, you have to take a lot of medication. My daughter's allergist had her on a week of pre-medication leading up to the day of, and then more medication for a couple of days after. My amazingly brave daughter had 12 shots in each arm (4 every 25 min) in one morning for a total of 24 shots! She did very well and had just a tiny bit of localized mild swelling. Her arms were sore that day, and the next, but she was grateful to be weeks ahead of where she would have been if we had not done the rush immunotherapy.

To get through her allergy shots, my daughter swears by the "Shot Blocker" which works by distracting your skin with many little hard plastic points. If we forget to bring it, she asks the nurse to give her a good pinch so that she does not feel the needle going in. She also relaxes her arms and a lollipop always helps. Here is the link to the shot blocker on Amazon: SHOT BLOCKER

Printable Allergy Shot Tips Poster for Kids

Tips for Allergy Shots:

My daughter is going through allergy shots. We struggled at first with her fear of shots, and found a few ways to get past it. The poster is free to print for the home or allergist office: 

Food Allergy Aware Letter to Parents

Food Allergy Aware Letter to Parents:

A letter to the parents is always important if certain foods need to be kept out of the classroom due to severe food allergies

Here are a few examples:

To Print from smart iPad/smart phone/iPhone: Touch image to bring it up full size / choose "save image" and then print, or choose "print" right from there.

To print from PC: Right click on image / choose "open link in new window" / right click again on image / choose "save image as" / name image and save to your desktop or file / open from there and print.

To use the blank template in Word, save image to your computer, open Word, click on Insert, add image, choose layout option of image behind text, and "fix position on page". Then you are ready to add text.

Substitute Teacher Handouts for Kids with Food Allergies, Food Allergy Alerts for School Plus Staff Sample Letter to Parents

Substitute Teacher Handout and Teacher Letter to Parents for Kids with Food Allergies

I recently made one for my daughter's new school year. and thought I'd share with you! 

Every teacher has a folder at the ready for a substitute teacher in case they need to be out of the classroom for the day. 

To print, click on image, and save to your device, print from there.

Letter to Parents from Teacher:

Food Allergy Aware Studio and Dojo Posters

Food allergies are a concern not only in the classroom setting, but also in other places like the dance studio, and martial arts dojo. 

There have been a few times over the years where I have had my heart jump to my stomach watching my daughter come out of a studio with a candy in her mouth. Even though her dance teachers have always been told about her severe food allergies, mistakes can happen.

Our rule is only candy from home unless it is pre-approved, but when an instructor or adult in a position of leadership hands a child a candy, sometimes that rule can be forgotten.

Sticky hands from an earlier snack, especially if the snack was eaten in the studio can also be an issue if shared equipment or a shared dance bar is involved. 

A poster is a good reminder for both adults and children alike.  A recent email from a dance teacher asking for a sign for her studio inspired these new posters. 

Thanks to her I can now offer them to you all! 

To print: Click on image, then right click to save to your computer or device, print image. 

Allergy Shots for Kids Facebook Group!

Going through this allergy shot (allergen immunotherapy) journey has had many ups and downs.  I just started a Facebook Group "Allergy Shots for Kids" to be able to share those ups and downs, and find support from other parents who's children are on the same path.

My daughter is just about to reach maintenance! That means we will go in just once a month! We are all very excited about that!  The biggest hurdle to reach this point for us was the initial allergy shot. My daughter's fear of needles was overwhelming, and she would cry and shake just thinking about it. Thankfully we found ways to conquer that fear, and after the first painless shot, she was able to calmly start her journey towards better health. 

If you or your child have gone through this journey, or are just starting allergy shots, feel free to join the group to talk about your experience, your child's experience, advice on allergy shots, and any fears you or your child may have. The link to the group:  Allergy Shots for Kids (Allergen Immunotherapy)

How Clean Is the Air in Your Home?

As a parent of a child with allergies and asthma, air quality is on my mind frequently. When it comes to clean air and allergies, I mainly worry about the outdoors as we are currently living in the South where there seems to be pollen in the air at all times of the year. What I sometimes forget to consider is the air inside of my own home. Thanks to Modernize for this very helpful guest post!

How Clean Is the Air in Your Home?

Via Modernize

Everywhere we turn, it seems like allergies and sickness are on the rise. Sensitivities to food, plants, and chemicals are rampant, and it’s no wonder why. With all of the toxins in our very homes, we are all vulnerable to a gamut of symptoms that affect our daily lives. According to the Environmental Protection Agency, indoor air is 2 to 5 times more polluted than outdoor air. This indoor air pollution can exacerbate countless short and long-term health problems, including respiratory problems, watery eyes, colds, and headaches—and it can even trigger asthma attacks, worsening an individual’s condition.

For anyone ready to take action against indoor pollutants, Modernize discusses the sources of toxins in your home and how you can stop your kids’ exposure to these harmful chemicals.

The Culprits: Harsh Cleaning Supplies and Hygiene Products

Cleaning supplies and even some hygiene products aren’t always required to list every single ingredient they contain—and even if they did, we might not all have a grasp on what the ingredients are or the harm they can do. In fact, fragrances are considered trade secrets, and the word “fragrance” or “parfum” on a bottle could mean pretty much anything. Many cleaning supplies are associated with asthma and respiratory problems, while skin irritations can often be traced back to seemingly harmless hygiene products. Bleach, ammonia, fragrances, and VOCs (volatile organic compounds) are just a few of the harmful or potentially harmful chemicals contained in cleaners, air fresheners, detergents, and personal grooming products.

The Solution:

Remember that “green” doesn’t always mean healthy. Any company can slap a “natural” label on a bottle. Research the ingredients that are best avoided and closely review all the products your family uses and buys. It sounds like a lot of work, but once you find brands you trust, it will be worth the trouble. Look for cleaning products without VOCs, fragrances, bleach, ammonia, and flammable ingredients. As you shop for shampoos and soaps to be used on the skin, make sure to look for sulfate, fragrance, and paraben-free products. Avoid DEAs, MEAs, and TEAs, which are hormone disrupting chemicals found in personal hygiene products more often than not.

Remember, you can always make your own cleaning supplies and hygiene products. If your family members have problems with asthma, skin irritations, or frequent ailments of any kind, it’s certainly worth a shot. Vinegar, baking soda, castile soap, lemon, and olive oil are wonderful ingredients for effective homemade cleaners. Make sure to follow trusted recipes, as not all these substances should be mixed.

The Culprit: Paint and Sealants

Those darn VOCs are everywhere. Traditional paints, sealants, and even fabric treatments emit VOCs for a long time after they are applied to the walls or furnishings in your house. This is especially dangerous when it comes to painting entire rooms in your house.

The Solution:

Look for water-based eco-paints without VOCs. Back in the day, these didn’t used to go on as smoothly as paints with harmful chemicals, since the harmful chemicals were what allowed for the smooth texture. But more and more natural paints are mastering the look without sacrificing your health. If you really want to go the extra mile, make sure to buy carpet, rugs, and furniture that you trust hasn’t been treated with toxic chemicals.

The Culprit: Poor Ventilation and Dirty Air Ducts

Weather-stripping and tightening up your home can sure save on energy costs. But it also reduces proper ventilation, which essentially turns your home into a chemical stew (not to be dramatic). Meanwhile, dirty air ducts can be a source of mold, fungi, dust, and other pollutants.

The Solution:

Open windows as much as possible. This will keep the contaminated air moving out and the fresh air moving in. Change your filters when needed, and be sure to get your ducts professionally cleaned (if not done correctly, it may only stir up the pollutants instead of getting rid of them). If you have pollen allergies, however, keeping your windows closed when the pollen count is high may be necessary, so check your local pollen counts, as well as the filters in your air conditioning system.

The Culprit: Tracked-in Chemicals

Our shoes come into contact with all manner of offensive chemicals daily, from oils in the street to heavy-duty public bathroom floor cleaner to pesticides.

The Solution:

Even if it makes you seem a little uptight, asks your kids, spouse, and guests to take off their shoes at the door. If your kids seem to have trouble following this rule, install cubbies where they can place backpacks, coats, and shoes as soon as they walk in the door.

The Culprit: Carbon Monoxide

All of your fuel-burning appliances have the potential to emit harmful gases. While some are detectable, others may not be. And by the time you detect them, the damage may already be done.

The Solution: Carbon Monoxide Detector

Install a carbon monoxide detector to ease your mind and secure your family’s safety from this deadly gas. Make sure to get all of your fuel-burning appliances inspected by a professional to prevent dangerous gas leaks in your home. You can also get your home tested for radon, an odorless and invisible gas that is the second leading cause of lung cancer.

Other Solutions

Once you become aware of all of hazards within your very home, it’s hard not to feel somewhat paranoid and conspired against. But once you have faced the realities and come up with solutions that work for you and your family, you will feel at peace and in control. Even if you don’t tackle of the solutions listed above, consider getting an indoor air quality test and installing portable high-efficiency air particulate filters in the bedrooms of your home.

Gus the Goat Goes Gluten Free: Fantastic NEW children's book about food allergies

A review of   Gus the Goat Goes Gluten Free: A fantastic NEW children's book about food allergies!

 

A Positive and Encouraging Book for Young Children with Special Diets

As a mother of a child with multiple food allergies, and other dietary restrictions, I am always on the search for children's books about food allergies.  I look for books with relatable characters, and encouraging messages.  I have seen how a good children's food allergy book goes a long way to help my child understand her medical condition and the social aspects of her restricted diet in a positive way.  I was thrilled to find Gus the Goat Goes Gluten Free, written by Rebecca Champlin and illustrated by Lauren Champlin, as it is a wonderful example of a positive, and encouraging book for kids with food allergies, or special medical diets.

Celebrate the Foods Your Child Can Eat!

Gus the Goat Goes Gluten Free is a sweet tale about a goat that finds out that he has food allergies.  He discovers that he can't eat all of the same things that his friends eat, but by eating the right foods for his body, he feels so much better. Gus the Goat Goes Gluten Free focuses on celebrating the foods that your child can eat and encourages them to take care of their bodies by eating those foods.  I love the empowering message in this book, that it is cool to eat the right foods for your body, even if they are different foods from what others eat.

A Gentle Conversation Starter for Your Child

This book is a lovingly crafted tale that can gently start the discussion with your child about why they have to eat a certain diet that may be different from what their friends eat.  One of the most difficult aspects for me in raising a child with a restricted diet due to food allergies, or celiac disease has been the social aspect. Seeing friends eat differently can be confusing, and hurt feelings can arise at birthday parties and other social gatherings where sticking to the foods that are best for your body can be more difficult. Gus the Goat Goes Gluten Free can help your child see those challenging social times in a positive way.  Gus the Goat Goes Gluten Free can be used as a conversation starter to help your child through the times where they may want to eat the treats others are eating, and may not understand why they can not.

Keeping the focus on the positives of sticking to the foods that are best for your body can be tough at times. Gus the Goat Goes Gluten Free is a big help as it encourages your child to celebrate what they can eat, and empower them to take care of their bodies.

You can purchase this adorable book, and discover more about the author and illustrator by clicking on this link  http://www.gusthegoat.com/ .

Food Allergies Can Cause Emotional Pain, How You Can Help

My daughter does a great job taking her own treats with her and dealing with it, but sometimes it gets to her. Food allergies can make anyone feel excluded and sad sometimes, especially in school.

Being prepared with a safe treat box has helped my daughter, as has preparing for not being able to take part in every snack or treat at school, family parties, play-dates, sleepovers, and social gatherings.

For ideas on how to include all of the children during class celebrations, check out my food free treats and craft ideas on Pinterest https://www.pinterest.com/ThriveWAllergy/non-food-birthdayholiday-treats-for-school/

Also take a look at the books, and information for Elementary teachers that I have collected here:
http://thrivingwithallergies.blogspot.com/p/resourses-to-share-with-c.html

 

Being prepared goes a long way!

 

 

Keeping Kids Calm While Waiting in the Doctor's Office

 

Most parents would agree that the most difficult part of routine doctor's office visits is the wait. Add in one or two siblings and the wait gets even harder. Many Doctor's offices have TVs games, or coloring tables, and some have a fish tank or two, but after the first visit or two, even the fish tank can be ho-hum.

As a parent of a child with asthma, and allergies (currently going through weekly or bi-weekly allergy shots) sometimes it feels like the allergist's office is our second home, and my two kids sometimes make themselves a little too comfortable.  Becoming possessive of the office's toys, or telling someone that they must move as they are in their favorite spot are not cute, no matter how cute I think my kids are. To prevent this I do my best to keep them occupied by bringing along a goody bag of distractions.

Our favorite things to bring to the doctor's office:

Toy Cars- one for play, and one for sharing.
Two small dolls or stuffed animals.
Coloring Books- and a small baggie of crayons.
Small Puzzles- Puzzle apps are great for this!
Brain Teasers- Rubik's Cube is a good one, or printable word brain teasers are great.
Color wonder water painting book with magic painting pen- no water or brushes necessary.
Books- Read to self book for my 8 year old, and picture books for the 4 year old.
Phone or tablet etc. with games- Make sure to pack the headphones!
*Gum- I know this is a questionable item as it can end up stuck underneath the chair, or in the hair, but it beats food, and keeps my little ones entertained. I promise I make sure it is thrown away responsibly!
* Dum-dums, or other small suckers for shots- I read that sucking on something sweet lessens the pain. I know it's also a questionable choice!

Items NOT to bring:

Food- Someone may have severe food allergies, plus kids leave crumbs everywhere.
Juice- You don't want to stain the chairs or have sticky fingers and clothes.
Anything that makes noise unless it comes with headphones.
Large containers of water- You know a spill is inevitable with a heavy bottle.

Where did I come up with the list of items not to bring you ask?  Well, not too long ago, I was in the waiting room with juice stains down my shirt looking like a fool as I tried to figure out how to turn the blasting volume down on my son's Leap Pad while at the same time brushing sticky cracker crumbs off of the chair while tipping over my ridiculously full and open camping water bottle. Wouldn't want you to recreate the scene!

I try to keep the goodie bag fresh and entertaining by rotating the items in the bag, and finding new kids learning/game apps for my iPad.

We will be in the allergist's office 1-2 times a week for the foreseeable future. If you have any tips on how to stay entertained in the doctors waiting room. Please share!!

Book about Allergy Shots for Kids

Book About Allergy Shots for Kids 

I have a new project in the works that I am super excited about! I am writing and illustrating a book for kids about allergy shots!  My daughter was terrified when we first started talking to her about allergy shots. She told us that she would never agree to them! She was afraid of the shots, and a lot of the fear about allergy shots came from not knowing what to expect. I found that by explaining all of the benefits of the allergy shots, and walking her through the process, that she was better able to accept it, and felt prepared, and in control of the situation. She is now doing very well with them! 

In researching ways to help her understand the process, and overcome her fears, I searched for a book for kids about allergy shots, and could not find one. So, I decided to write one! Telling my daughter the story, and explaining allergy shots to her in simplified terms helped her so much that I was inspired to create a book to share with you! I hope that it will help ease your child's fears, and provide an understanding of why allergy shots are important and beneficial. 

Here are a few sketches from the book. I will be posting as I go to keep me on task as this will be my first book, and any opinions, tips, or comments from your or your kids about what you/they would like to see included are welcome! 

 

Sketch for introducing the character:



Initial sketch of the main character Elliott:

Added color!

 

Checking the Skin Prick Test:

 

 

 

 

 

Little sister thinks this is great fun!

Hanging out with friends in the springtime:

 

 

Sketch for the allergy testing:

 

Up all night with seasonal allergies:

Sketch for the shot:

 

It's not so bad!

 

 

Sketch for the 20-30 min after shots wait in the office:

 

 adding color